We finished weaning the clobazam this past week. When we got down to a 1/4 of a pill she started going into non-convusive status. She started drooling, staring, her hands and eyes having constant twitching. She has still maintained functioning (eating, walking etc), so it is not an emergency right now. We were expecting to have some withdraw from the clobazam but still hate to see it. The benzo class of drugs are pretty hard to wean (valium, ativan, clobazam, klonopin and more). The brain has a hard time letting go of the drug even though the brain has built up a tolerance to it. We will wait out this week and see if she gets back to baseline (which has been the nightly grandmals). If not we will add back the clobazam.
I am also undecided about the bromides right now. I can't make an appointment in Cleveland yet to see Dr. Tuxhorn. We have been thinking of trying topamax again while we wait until we can get to Cleveland and have Dr. Tuxhorn oversee Lauren on the bromides. Topamax was one of the first drugs she was on before starting the keto diet. It help control the grandmal seizures for over a month but caused her drop seizures to increase greatly. The side-effects of Topamax are not great either. Non of them are, but this one effects her expressive language which is her greatest delay. It also takes away their appetite and their ability to sweat- to name a few. The hope would be that with her drops under control that the topamax would help with the grandmals? I don't know what we will decide to do, It's all just trial and error, so I guess it doesn't matter which one we try?